New member

[Kiernan]

Hello

I just joined last week. Diagnosed three weeks ago. I am somewhat overwhelmed at this point- but trying to absorb it all. I had a cystoscopy- which resulted with the diagnosis, IC. I have another app. with my UO next week to discuss plan. If I could ask several questions, it would be greatly appreciated.
I called my doctor's office to ask if they deal with alot of IC- so I can be treated effectively. The nurse said he does.
Should I ask for anything in particular, insofar as meds go? Or should I wait for him. I had a terrible summer with all of the symptoms- not knowing what was going on. I am a nurse. however, had never heard of this. I thought their was something terribly wrong with my bladder. I have bladder spasms, urgency, frequency, etc. Some nights are awful. Two nights ago I had intercoarse with my husband and within 10 minutes my bladder was burning and in spasm. He had given me a prescription for tylenol with codein- so I took one- which helped. Does that happen all the time?
I am learning diet is so important- but where should I start. I feel like I have to stop everything I like. I am trying to drink less coffee, only h2o, no soda, nothing spicy etc.. any suggestions would help
How much water should I drink-all day?
Why does driving in the car for more than 1 hour give me terrible pain in leg and back? what does that have to do with bladder- but it all started at same time. I am thin, so I cannot afford to lose weight. I am active- speed walk.
Since I had the cysto with anesthesia, stretched urethra, etc... i feel somewhat better. My pain today seems better but somedays I get those bladder spasms and back pain out of the blue.
Thanks for any advice. Mary

[emilyrose197377]

:welcome: to the icn.

[Katrina]

:welcome: I am sorry you have IC....very glad you found us.
Most likely you will be given Elmiron...if you are suffering a lot you may want to consider jump starting your Elmiron (which normally takes 3-6 months to START helping) with some Elmiron installtions. http://www.remedyfind.com/hc-Interstitial-Cystitis.asp This link will bring you to a list of treatments for IC rated by patients. I highly recommend the diet...which you will find in the handbook (link at the bottom). There is also info on medicines and other treatments there too. It is very common to get a flare up of symptoms after sex.....their is some info on flares in the handbook...but there is also some more along with a list of flare triggers in my newbie kit I gave you a link to.
To me starting the diet was illiminating tomatoe sause, soda, dark chocolate, and fruit. After a while I could handle fruit as long as I didn't drink it....drinks are usually the hardest on me.
Car rides are also common flare triggers and for the pain to radiate down your leg and bother your back are also common. I recommend sitting on a pillow (not only when in a car but especially then!) There is more info on things to help longer car rides in the handbook. There are also some great products in the ICN store. http://www.icnshop.com/ There is a online cookbook http://www.ic-network.com/icchef/ and some books for sale in the store to help you follow the diet without loosing weight...and Confident Choices by Julie Beyer has a lot of good advise on starting the diet and many resources. ww.nutraConsults.com/confidentchoices.html
She includes some info on excercise. When I was first diagnosed I couldn't handle speed walking...slow walking was good though. Be carefull about things that push on the lower abdomen or make it vibrate or move fast. Sounds to me like you need an antispasmodic. There are a lot of choices for those and sometimes it takes trying more than one. Pyridium plus has an antispasmodic in it and may help other things...may be something you want to try. Please look at the links and let us know how things go at your appointment. Let us know if there is anything more we can do.

:grouphug::grouphug:

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last one is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is nexbie kit from the oldies to the newbies

http://www.ic-network.com/forum/showthread.php?t=9858 this link has a list of work at home ideas

[K9wife]

This is a great place to come for support, and maybe there is a live IC Support Group near you in addition? Just a thought.....welcome to the world of IC...

[Kiernan]

Katrina

Thanks so much. I feel so blessed to have this message board. I was so totally overwhelmed- now I'am feeling more positive and hopeful- thanks to all you.
Enjoy the week! Kiernan

[eveslilith]

Has anyone had any negative experiences with marshmallow root tea? After reading about it I started to drink 3-4 cups a day and soon after experienced a flare-up. Not sure if it was the marshmallow root tea, the amount of tea or something else in my diet that brought it on.

[ICNDonna]

Have you read the diet information in the Patient Handbook? You'll find the link at the top of this page. There's are also some helpful diet books you can find in the ICN Shop.

For eveslilith: Marshmallow root is a diuretic. I suggest that if you wish to drink it, you start very slowly, with a very weak tea --- and only drink a little at first. I can't drink it because I'm already on a diuretic for high blood pressure.

Donna

[Katrina]

My marshmellow root capsuls increased my frequency!
You started with a lot always start slow! Is there anything else in the tea besides marshmellow root....sometimes teas have other things in them not easily tollerated.

:grouphug:

[eveslilith]

Kierman:
There are many treatment options both western and holistic. Sometimes it takes a bit of trial and error to find what works best for you. Before I found this site I was in complete denial about having IC. I just didnt want to believe I could have something which was so hard to treat. This inability to face facts delayed any real attempts to seek treatment options. Thankfully I got brave enough to face things....This site has been a tremendous help.

I wasnt very bright in my approach to drinking marshmallow root tea. After drinking 3-4 cups of strong Marshmallow root tea a day my IC went from mild urgency and frequency to intence urgency and frequency 24/7. Up to that point I had been fighting using western medications. I wanted to treat myself with accupuncture, chinese herbs, massage/reiki and hypnotherapy. I guess I was in denial about having something like IC. Theres nothing like three days of having intense urges to pee so strong you cant sleep to change your mind!

My urologist prescribed oxybutin 5mg three times a day, ativan 1mg at bedtime and pyridium as needed.After 5 days my symptoms decreased to the point where I was able to cut out the pyridium. The goal is to eventually cut back to 5mg oxybutin two times a day while remaining symptom free.

I've given up the chinese herbs and teas but still use accupuncture/massage and reiki to compliment what my westen dosc is doing for me. So far things seem to be progressing nicely.

[Katrina]

Glad you made the change.....not all teas are bad...and just like with western medicine it can be hard to find out what works for you....but always start slow and don't try more than one new thing at a time so that you know what is bothering if something does. Good luck in your treatment!!